Announcement regarding the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers Strategic Oversight Group

Following on from the announcement of the delivery partners in July of this year of the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers, there has been a process by which Autistic representatives were able to apply from the NHS England Learning Disability and Autism Advisory Group to join the Strategic Oversight Group led by Skills for Care, Health Education England, and the National Development Team for Inclusion. 

After an application and interview process, Autistic UK is proud to announce that one of our Directors, Julian Morgan, as a member of the NHS England Learning Disability and Autism Advisory Group and the NHS Citizen’s Advisory Group, was appointed as one of two independent Autistic members of the Strategic Oversight Group.

Visit the website here

Julian will be attending his first meeting of the Strategic Oversight Group at the end of October, and is looking forward to being able to put our wider Autistic community’s views and concerns forward to those responsible for its implementation and evaluation. 

To this end, Autistic UK will be continuing its focus groups and surveys so that Julian is fully informed and up to date with the wider Autistic community’s wishes and concerns. Through this we hope to ensure that your voices are heard directly by those who need to hear them. Our next survey will be shared across our platforms in the next few days, with the questions being based on the answers received in our initial survey. The report generated from our initial survey has been passed on to the Implementation and Evaluation Partners via NHS England.

As one of Autistic UK’s founding principles is that we do not seek to speak for Autistic people but provide a platform for their voices to be heard, we encourage all of you who read this to grasp this opportunity to have your views put before those decision makers responsible for the creation, implementation and evaluation of the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers. In turn, we will also use the discussion points from the Strategic Oversight Group meetings to inform our future survey questions. In particular we are seeking answers from those whose voices are normally not heard, especially those of you who also have a learning disability and those with high support needs.

We will also be putting out surveys which focus on intersectionality, for example, LGBTQIA+ and Black and other Ethnic Minority communities. This is to ensure that health and social care inequalities faced by those further marginalised groups are specifically highlighted, and that feedback isn’t based on one subsection of the Autistic community.

This will also include input from the official partners regarding the areas which they would like to consult with you on, which should give our community an idea of their understanding and focus. These will always be put out separately and be clearly identified as questions being asked by those organisations. Please be assured that all of your answers to these questions will be passed on anonymously, but word for word.

As ever, the results of all of these surveys will be published on our platforms as soon as they are available.

Getting away with murder; and why it should not happen

Photo credit: USA-Reiseblogger available free on Pixabay

Like all of our community, we are deeply saddened by the death of an Autistic child whose mother has been subsequently charged for his murder.

The greater tragedy surrounding the murder of this little boy is that it is unfortunately far from being an isolated case. This is rarely reported in mainstream news, and all too often when it is, the blame is laid at the feet of the murder victim as a burden to society.

This victim blaming culture is most visible on social media, where people flock to express their sympathy and empathy for the perpetrator, raising them to the status of a martyr. Phrases such as “mercy killing”, “they are in a better place”, and “what else could they do?” flood our newsfeeds, while the Disabled community’s voice is dismissed as “not understanding how hard it is to be the parent of a severely Disabled Child”.

Disabled people are parents too. Generations of families live with severe genetic conditions, many of which are hereditary and vary in their severity of their presentation. We are quite aware of “how hard it is to be the parent of a severely Disabled Child”.

At Autistic UK, we believe we echo our community’s voice in condemning these insidious attitudes often voiced by those who are not parents of Disabled Children.

Our current societal culture has developed the ability to see Disability as a reasonable excuse for murder. The pervasive view that the caregiver has no other choice needs to stop. There are always choices; even the perceived failure of giving up your child is preferable to murder. Murder is never acceptable.

We would suggest that other options include:

Seeking professional help:

  • taking the child to hospital
  • taking the child to a police station
  • taking the child to a fire station
  • taking the child to social services
  • dialling 999 if you feel you are about to harm your child
  • calling your GP and telling them you can’t cope
  • contacting disability charities and their associated support networks

These services and routes all lead to a Safeguarding Duty. Everybody in the public sector has responsibility under this duty. Duty holders must act in the best interests of the child.

Informal help:

  • seeking help on social media and/or websites – there are lots of support groups out there whose members will have similar difficulties
  • family and friends
  • contacting disability charities and their associated support networks
  • finding a local support group
  • open your web browser on any device and search “help with <insert name of disability>” – there will be a number of results providing details of support networks

Where specific support organisations don’t exist, there is always Unique, a Charity dedicated to supporting families of children with extremely rare genetic conditions.

For further information about this, please visit https://blog.theautismsite.greatergood.com/caregiver-murder/.

 

If you are distressed or affected by  the issues discussed in this statement, you may wish to contact one of the following support helplines:

Samaritans: Telephone 116 123

Shout: Text “Shout” to 85258

Papyrus: Hopeline UK Telephone 0800 068 41 41

National Domestic Abuse Helpline: Telephone 0808 2000 247

Childline: Telephone 0800 1111 (they also take calls from adults concerned about a child)

Cruise Bereavement: Telephone 0808 808 1677

Most of these organisations also have a chat function on their websites. In order to maintain your confidentiality, many of their telephone numbers will not show up on statements and may not be traced back to them in your call logs. You can find details of this on their websites.